#26 Abdominal Alien

The last week has been an absolute crap struggle. Much like back in January except no blood sugar drops, no itching, or splitting fingertips. Although there's been a considerable amount of pain, lethargy, fear, and loss of appetite. I may write some more throughout the week and I may not. It is taking all my energy to not let this monster get the best of me. It is a torturous alien bastard scumfuck.

#25 What We Think About When We Think About Death

I’m not dead yet so I have the luxurious curse of thinking about it way more than I’d like to. Fantasizing things I can and cannot do. Everyday upon arising the thought of still being alive is present, then at 6am my iPhone alarm sounds; crickets chirping and the words You Lucky Bastardo remind me that I most certainly am one lucky bastardo. And no matter how physically or spiritually painful things get this day I am still here. I vowed a while back that I would accept what is as it comes, and that eventually it would subside, and if it didn’t I would find a way to continue on as bravely as possible. My vow is mine alone, but I do have a deep understanding, and compassion for those who decide not to whether the storm because life has become something else that they cannot call living. A time like that may come for me but it is not yet here. I think about what I’ll do, if able.

This past week, one evening much like many before, my wife and I were getting ready to watch a DVD. I went to the TV, bent over to pick up the movie, and Mickey Mantle hit me right in the liver with a spiked baseball bat—it might have been Barry Bonds or Mark McGwire for all I know about baseball. I said “OHHH SHIT” and lifted up my shirt and put my hand over the area and looked at my wife. The both of us silent. We don’t need words anymore when these times come. I went to the cabinet and did three milliliters of jungle juice. Usually the taste of that vile swill is the first thing to move my mind from the pain. Not this time. I had to hold it under my tongue and swirl it around my mouth like some masochistic sommelier, and every thirty or so seconds let a bit trickle down my throat.  Sublingual activation.  I sat on the couch and held my wife because I thought my tumor or liver had ruptured and I would internally bleed out.  After a half an hour the pain had gone down to an eight, so another three mils would do the trick.  Adding to that a half a Xanax to stop my head and in about an hour the pain was a manageable four.

I’ve had something like this happen before only not quite this sudden so I had the chance to preemptively medicate and it never got this painful.  None of my oncologists, doctors, etc...knew exactly what it was, although one of them did mention a rupture in the tumor.  If I was bleeding internally, last time, or this time, I would know it.  My stools would be black but the color is still normal.  At Kaiser (that place will be the death of me yet) they misdiagnosed it as gall stones and were set to do some sort of invasive surgery when I checked out “against doctors orders,” signed their forms, and went home.  One usually tries to reason things like this out which is a total waste of time, suffice it to say it happened because I have cancer and fucked up shit happens...En Fin.

So yeah, the death thing.  It sucks because for the last twenty or so years the number eighty-three has always been in my head for the age I was gonna die; but I don’t know, nobody does, that still might happen.  I’ve always looked forward to getting older.  Even from a very young age, like at seven I couldn’t wait to be a teenager, when I got there I wanted to be twenty-one.  Then it subsided for a while and I was having too much fun...but now, well shit there ain’t nothing I want more.

Even if we both live until we’re eighty-three I’ll never have enough time with my wife.  If she were not in my life I’d have a much easier time with all this.  But I just have to picture her in my mind’s eye, or glance at her while I’m driving her to work and I could sob tears big enough to drown in.  And if I do die sooner rather than later I can’t bare the fact of her being alone, but I won’t have to (probably) because I’ll be the dead one, and she’ll have that internal sadness and that is the most saddest thing I can let in my head.

For myself, I’m curious about the afterlife if for no other reason than to find out if this is it or is there more.  I guess everyone wants to believe in some sort of afterplace-reward, and it’s the same ones who want there to be the afterplace-punishment.  I’m sure that if there is a hell that the ones who will be going there don’t believe in it.  I think if people find comfort or enlightenment in things of that nature then it is good. I never have.  I’m fairly certain, like most things that go on in my head, when I’m thinking about situational outcomes that it always turns out differently than I thought it would.  It doesn’t make sense that heaven and hell would be as complex as life, if so then where did RIP come from?

I have to stop now.

Thanks to Raymond Carver for the ideal title.  If you haven’t read “What We Talk About When We Talk About Love” you should, it’s a magnificent collection of short stories you won’t soon forget.  In fact I think I’ll read it again, if I have time...

#24 An MRI, a CCD, and a PRS

I made up the last two acronyms.  An MRI is magnetic resonance imaging, and it’s such a big-ass magnet that they don’t allow any metal on your person...belts, rings, pacemakers, etc. However, they don't tell you about credit cards in wallets.  I should have known, common sense and all, but I had taken a Xanax because the dye that they shoot you with freaks me out, and besides, the Xanax on top of my usual opiates, and common sense becomes a rare occurrence.  So I suffered CCD—credit card destruction.  For a while I couldn’t figure out what was wrong with ALL my cards because Ha and I have the same cards and hers were working fine, then I remembered, the MRI tech, whether he was in a hurry or that’s his MO, did not have me strip down to skivvies and don the always fashionable Dufy blue VA Hospital gown.  The replacement cards are on the way thanks to my wonderful wife.

That brings us to PRS.  Port removal surgery, and I must say I am quite happy the day finally got here and within ten days I’ll be back to my usual yoga routine.  That thing made me feel like Frankenstein, this silver dollar sized disc barely below the skin three inches down from my neck on the right hand side with a tube that snaked up my neck to an artery.  It did make my blood-tests easier because I’m a real hard hit when it comes to the veins, just like dear old mum.  Before and after the port I usually leave the phlebotomist’s cave all black and blue, and if they haven’t hit it by the third try I request someone else.  So yeah, having the PRS is more pro than con for me. 

With the Kunin Vitafusion on Tuesday in SF, then the MRI Wednesday, and the PRS Thursday, both in SF, and the second appointment with my new acupuncturist on Saturday, you could say I’ve had a busy week.  Thursday and Saturday my wife went with me and that’s always good.  On Tuesday my mom took the bus up to SF with me, Al, my sib, picked us up and drove us to the doc’s place.  Afterwards we went to Miller’s East Coast Delicatessen, which specializes in all that Jewish soul food from our childhood’s.  Knishes, Kishka, Chopped Liver, etc...it was great being with my family and reminiscing.   To us Jews food is so much more than sustenance. 

Nana Beatrice Austin

I remember my dad’s mom, Nana Bea, from whom I inherited my talent and passion for food.  She would always stand behind her husband, Zaide Sam, at the beginning of our family meals and holiday dinners, for a few seconds, just long enough to scan the food and her family smiling and eating and loving every bite.  I’m sure this was her goal in life.  That’s what I call success.

My Aunt Rhoda (my mom’s sister) and Uncle Stanley are in from Boston to spend time with their new grandson, Wyatt.  Ha and I are really excited too because we haven’t seen them in a while.  Rhoda and I talk just about every week, and Stan is a doctor, he's been extremely helpful when any problems come up for me.  They’re an important part of my support team and I’m very grateful for that.

Ha and I are really liking the new acupuncturist. She has me talk about the weeks problems, physical and otherwise, and I can see her charting the meridian course for the day based on what I’m saying.  Then it’s up on the table, tongue check, pulses check, lastly the needles, and all the while she’s doing these things she’s explaining what’s changed since last week and how it all fits together.  It’s like a lesson in Chinese medicine.  Great stuff. 

#23 Baby Wyatt - Wonder of Wonders

Sir Wyatt the Red...head

Good lord the sweet holiness emanating from this baby, you could have pushed me off a pier with a pussycat whisker.  It was a truly unitive experience seeing Sharon cradling Wyatt and sitting in a big easy-chair, looking out at the San Francisco bay, a picture of proud motherhood.  Zachery, Wyatt’s big brother was napping quietly in the other room, but the ease of Sharon’s demeanor, and the confidence with which she handled Wyatt, you automatically knew she had done this before and clearly loved where she was in her life right now.  The father, my cousin Craig, had the same glowing sphere of light and beauty around him; anticipating mother and child’s every need, a smile for miles on his face.  Two boys.  What father wouldn’t be floating on clouds of ambrosia?

Ha and I just stood there staring for a while.  I can’t recall how long it was before Sharon asked us if we wanted to hold him.  I didn’t trust myself because of the amount of opiates in my system but Ha got pretty excited.  The handoff... and I finally remembered to pull out the camera.  Ha and I had decided not to have kids but we really do enjoy them when they become a part of our family.  I love when my sib Al sends me pictures of Amir’s latest escapades and outfits, not to mention his soccer addiction of late.  Ha was thoroughly enjoying Wyatt and talking to him, not baby-talk either, like many people do, but the words she spoke to him were very musical.  I should have brought the video camera.

Our gift to Wyatt was a young Mandaquat tree.  I know—I’ve never heard of it either.  Apparently it’s a crossbreed of, you guessed it, Mandarin Orange and Kumquat.  Great idea, and like a Kumquat you eat the peel as well as the flesh.  Ha and I wracked our brains for a gift idea that was unique.  So we get there, with the tree, and Craig tells us that when Zachery was born Sharon’s mom bought him a lemon tree.  So much for originality.  At least we’re in good company, great minds and all that.  I still think it’s a stellar idea and that it should become a family tradition!  A boom of thunder and crack of lightning illuminate the sky - I Have Spoken.  Besides, I think Ha and I will be buying another tree sooner rather than later.  I mean two boys are wonderful, and will be quite the handful growing up, being so close in age and all, but two boys and a girl just sounds so nice.  Far be it from a cousin or uncle to try and have any influence on any young couple in the family, or for that fact, Al?  A boy and a girl would be nice.  I know my timing is a little off right now, but just saying...

Ok, now that the good news is out of the way we can get back to the gloom and doom of cancer...or not.  Actually it was a decent week, besides this diverticulitis that doesn’t seem to want to let me be, it’s been fairly uneventful.  I did have an appointment with Dr. Clark, who seemed to be thrilled that my numbers are heading in the opposite direction, nice guy actually.  Also I went to a new acupuncturist, not because I was unhappy with Dr. Rossman, but I found (through Suzanne Friedman) someone much closer.  Christy Mahoney, I’ve had one appointment so far and she’s very confident, extremely knowledgeable in, not only acupuncture, but medical qigong as well.  I also really like that she pointed out some Qi meridians that I can work at home.  I dislike having to lose a team member, but my transportation issues being what they are, it’s a decision I had to make.

 To preview next week I’m having an MRI on Wednesday, and my port (that uncomfortable chunk of plastic in my chest) removed Thursday.  So for next week’s blog I should have a couple of stories.  In closing I must mention that Ha and my weekends together are extremely wonderful.  We’re enjoying each other’s company, laughing and hugging more, heck today we even cooked together!  It’s just a real gift to be able to let go of the cancer and focus on what’s in front of us.

#22 Carrying The Load

This weeks entry will be a bit on the long side so I figured I'd start it out with some humor, albeit dark as a chocolate jungle, but humor just the same.

I know, the timing is just impeccable. Both Ha and I had a really good laugh.  Especially because they've taken the time and consideration to fill it out halfway for me.  Off what list or database do you suppose they gleaned my stats?  Something like "For those of you about to die...I give you FIRE!"  What was that old song from Arthur Brown? 

Included was literature on their services, and on the very last page, down at the bottom, in what looks like a size 6 font, it says, "Please accept our apologies if this letter has reached you at a time of serious illness or death in your family."  Why would they apologize for that?  It seems like that would be the best time to WIN a personally consumptive BBQ.  Heck, that's just good business.  Silver lining for the loved ones and all. May he rest in urn or scattered ashes.

I’ve been trying real hard to keep the lamp light bright and shining, but I dunno, this week has been a bit difficult at times.  Luz on, luz off, as Zachery would say.  A sudden case of acute diverticulitis and the accompanying pain had me thinking, on at least three occasions, that it was time to greet my Jesus.  Holy cow this shit can hurt...and it can hurt right through the huge doses of opiates I’m already taking.  Hurt to the point of needing “Jungle Juice” at regular intervals.  On Tuesday I cancelled my Vitafusion at Dr. Kunin’s and tried to sleep most of the day. 

Blah, blah, blah, pain and more pain, blah, blah, a two day scrambled egg, cottage cheese and Popsicle fast.  I'm just skipping most of the wailing namby-pamby bullshit.  It gets so tiring to hear myself complain.  I do believe I’m on the mend now and will not have to visit the evil empire that is Kaiser.

I really do think terminal cancer is quite enough to get through without having to deal with such a lesser strata of malady.  But then again, since day one, the main source of problems and pain has been abdominal.  For a man whose passion, art and bane was food, and has spent his entire career in the kitchen being fulfilled and filled full—do you think there’s a message here?  I’ve battled overeating (and over-indulgent behaviors) for most of my life.  Maybe it’s time to go a little deeper into that symptom?  Just what I need, more self-inflicted stress.

Anyway, Wednesday Ha and I went to see Dr. Kelley at the VA for my monthly check.  We also met with some people from Palliative Care unit which was supposed to be the precursor to the VA’s hospice program, but the doctor, Barbara Drye, didn’t think I was ready.  My understanding from the info I got through Dr. Kelley was that we would meet with these hospice people, find one with whom we felt a level of comfortability, and then IF the time came we would know each other somewhat...it didn’t quite work out that way so Dr. Kelley said she’d check it out.  As far as the check-up went not a whole lot was new.  My bilirubin numbers, which were at an 8.1 on Kaiser’s last blood test was down to a 3.5.  I knew it had something to do with Dr. Kunin’s program but Dr. Kelley’s last VA blood draw the bili was at 4.9 and she said it’s a standard fluctuation.  But we know better huh?

It’s so great when Ha comes with me to my appointments.  She’s so present and attentive and makes me feel like I can weather anything thrown at me.  Like a layer of Qi armor just below my skin.  We tried a new Pho place after the VA and, of course, it paled in comparison to Turtle Tower.  But we were hungry and needed to get across the Golden Gate before the commuters.

OK, so I’ve got an appt. with Dr. Clark, my Kaiser honkologist, on the 2^nd of March, so I figured I’d go in and get the blood-work done today, Sunday morning at 10am, no crowds, very little waiting, etc...plus, Ha and I could walk down by the Vallejo docks.  It's such a nice walk.  One good thing about Kaiser is they process the blood and email you the results usually on the same day.  You can also compare the previous few months with the current test in any category. I think these graphs, though a little out of focus, speak for themselves.

Bilirubin- A liver (hepatic) function panel is a blood test to check how well the liver is working. This test measures the blood levels of total protein, albumin, bilirubin, and liver enzymes. High or low levels may mean that liver damage or disease is present.

ALT- An alanine aminotransferase (ALT) test measures the amount of this enzyme in the blood.  ALT is found mainly in the liver, but also in smaller amounts in the kidneys,  heart, muscles, and pancreas.  ALT was formerly called serum glutamic pyruvic transaminase (SGPT).  ALT is measured to see if the liver is damaged or diseased.  Low levels of ALT are normally found in the blood.  But when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up.  Most increases in ALT levels are caused by liver damage.

ALP- The liver makes more ALP than the other organs or the bones.  Some conditions cause large amounts of ALP in the blood.  These conditions include rapid bone growth (during puberty), bone disease (osteomalacia or Paget's disease), or a disease that affects how much calcium is in the blood (hyperparathyroidism), vitamin D deficiency, or damaged liver cells.

Now the next logical step is to assign the various treatments I've undergone to the graph's calendar,  and try to find out which program coincides with which numbers.  As you can see there's a huge spike between 11/2/10 and 2/5/11 on all three graphs. This cannot be a "standard" fluctuation. 


Pay attention to the smallest, most subtle moments, because happiness and growth is contained therein.

Blog #21, a day late, on the 21st

Double-down blackjack bardo.  I am haunted by an infinity of ghosts who have nothing valid to offer.  Yet they persist in feeding on my brain.  They are doers, takers, and wanters; grey matter shredders.  They twist and turn my mind like it’s an old clock in a small metal box unendingly wound so far past its breaking point that metal, bells, and springs are constantly in a state of tolling ricochet.  It’s so hard to think in here.  So difficult to get away from myself.  The more I let myself physically relax and sleep or meditate the less these lonely haunted souls have to latch onto.  Spiritually I feel very grounded unto myself and my wife, no one else.  It is a very small circle, not what I imagined or think it should be, but so thankful for us nevertheless. 

This cancer has also forced me to look at things about myself and others I never wanted to know.  It’s given me more insight and depth which ultimately feels more like disappointment than any good kind of knowledge.  But from these places that end up in my head I am reminded of a short story I wrote a few years back called “When Blue Was Worth Its Weight In Gold.”  It’s about a volunteer at the VA Home in Yountville, California (which I did) who wonders how much is too much to chew.  In this excerpt he realizes that when you are with someone in trouble, or anguished, or ill, that being there with them is not only all you can do but it’s all that is required.

“I usually feel different when the car door closes, sitting there in the parking lot, before I drive home.  I feel the difference of one time ending to the other time.  I am out of the building and the physical distance created is indicative of the distance I am putting between myself and things that happened, thoughts slowly bleed into memory as buildings sparse into trees and vineyards.  It’s about a half an hour of driving and I realize I’m whining too high in fourth gear, I shift up and over to fifth before I conclude that I have been going over the series of events from the last five hours, not really for any resolute purpose that I can see but a replaying of them as if it’s an emotionally bad, bad hand and all the re-arranging won’t help, the three of spades looks just as bad next to the nine of diamonds as it did between the deuce and six.  Discard, throw away, Quit! “Just stop going there.” keeps clanging around my head, but that's not me. I know it’s not what I’m going to do.  Volunteers don't discard, this is what I signed on for.  I’m here where my presence is just what is required, and the answer may never arise because the answer is what I think I need.  And the result is what rarely matches up to any answer I might think up.  Sometimes all that is left to do is breathe in and out together in the room and know that another person is there.

Whether myself or an infinite number of other anybodies can handle it or help in any way is not what actually does happen.  What does happen is different to and for us all, we each have our version and each one is unlike the other, even when it’s happening.  This is why I let myself be affected by Sergeant Curtis, why I let it creep in and throw a wash of color over the landscape of who I am and what is already there.”

People fade in and out when you have cancer.  Some show up in various ways, and some don’t.  Some amaze you lovingly and others amaze you horribly.  Appropriate behavior is rarely thought out fully.  And what are you gonna do? Tell people they have to read this book or article, or go that website before you’ll deign them with your presence?  Some people you haven’t seen in years ask one of your friends to ask you if they can come over... No call, no email, no nothing.  Mind boggling.  It makes me feel somewhat side-showish.  Hurry, hurry.  Step right up, and for one slender dime see the boy who was supposed to be dead months ago.  Dark huh? OK, I’ll stop.


Body Wish

Aside from all the nut-ball places I’ve let my mind wander, and the last two days of horrible tummy shit, this week has been fairly restful.  I’ve felt good, considering... and I’ve been doing my walking just about every morning.  I’ve let the acupuncture and yoga slip a little because I’ve been yielding to the urges to sleep.  It just felt right to let myself sleep when I wanted to.  I had been manly-like pushing through the tiredness before because I wasn’t gonna let no cancer keep me down.  I discussed this with Dr. Kunin at my last appointment and he said two things that made sense: “Why would you ignore your body's wishes?” and “When you sleep your body can devote all its energy to healing.” Mmmmkay? My intuition scores a home run. Now I just need to solve the scheduling of acupuncture and yoga throughout my week.

Here’s a quote from Dr. Suzanne Friedman  who is an acupuncturist, herbalist, and doctor of medical qigong therapy. She received her doctorate degree (D.M.Q.) in Medical Qigong Oncology from the Beijing Western District Medical Qigong-Science and TCM Research Institute in Beijing, China.  She was diagnosed with stage IV lung cancer on February 25^th 2010.  In September 2010 her CT-Scan was perfect and she is now in remission. 

“Everyone's cancer journey is unique. What works for one person won't work for everyone.  I've found that the key is to trust and follow your intuition and never compromise your integrity.  Western medicine has much to offer, just as Chinese medicine does.  When used together properly, they are able to enhance each other.  How lucky we are to have access to both!”

Cousin Wyatt

OK, so the best news in the world is my Cousin Sharon (if you’ve been following you know how much she means to us) had the BABY!!!!!!  Wyatt, another boy-yippee wah dooski-9lbs.4 oz. and 21 inches long.  We are SO happy.

Valentines Day 2011

Love, Happiness, and Health to Everyone. 

L'Chaim with the Hamotzee Lechem Min Ha'Aretz, Y'all!

#20 Rough roads and Tense times

That was what this week was all about.  I guess that’s what I get for hoping to have a smooth and low-key week.  There was a bunch of stuff that made this week what it turned out to be, but moaning about it will just refresh my memory.  I’ve already taken the stressors into account, and realized what I can have an effect on and what is out of my control, and now it’s time to move on.  Besides, there were some very positive changes this week that are making me happy.  In this dark realm of cancer, happiness is a bolt from the lightening rod of hope that illuminates my soul...that’s gotta be good, huh? 

Dr. Kunin (pronounced like onion with a K) whom I’ve only seen twice, so this is still my initial impressions, has shown me another approach to cancer.  He doesn’t promise a cure but he does promise I’ll feel better and I might just get well when my body is functioning properly.  After my first appointment, he had me do a slew of blood-work to pinpoint all the areas where I was low and deficient in vitamins, minerals, etc... This week he took over an hour to explain how this all fit together.  His approach is humble, sincere, humorous (which was new for me, when it comes to my cancer, and doctors) and with a brilliance that comes from making what you feel is important, and are passionate about, your life’s work.  All that without a pedestal in sight!

Then I got my first I.V. infusion of vitamins from his right hand person, Jadwiga, (pronounced Eega or Veega, I’m still not sure) an amazing woman who runs Dr. Kunin’s office.  She is also a certified phlebotomist, and has one of the most confident and solid personas I’ve seen in quite some time...I would imagine some people easily intimidated by her. 

After the infusion, which took an hour, Dr Kunin got some family health history to add to my files.  My mom and sibling Al were there so that went fairly quickly.  Jadwiga filled me up a box of pills, powders, salves, and liquids for my in-between infusion days, which for the first three weeks will be twice a week, and that was it for the day.  There were a few pills and liquids missing due to stock shortage, but she promised she’d have it all by next week.

So, what’s the upshot of all of this?  How do I feel?  I feel quite a bit better.  I certainly have more energy.  The itching and dry skin has been reduced by three quarters, a major difference, and a joy not to have to constantly apply those creams.  My blood sugar levels seem a bit more manageable.  I’ve gone from between eight and ten finger pokes a day, to about five. And try though as I may, there’s no avoiding the fact that in comparison to the Burzynski price tag, the debt we’re incurring, hopefully lessened by contributions here, is far from daunting, overwhelming, and demoralizing.  This too adds to my overall better demeanor.

#19 Back to Basics

Sunday dusk and I’m just awake from a two hour nap. Having arose at 3:30 am, and unable to get back to sleep, I started my morning.

This week the itching and blood sugar levels are still bothersome. My cousin Nicole sent me a great lotion called Sarna, and Dr. Katie at the VA ordered me up some medicated body lotion, between the two it’s fairly bearable. I also found (at the pharmacy) these small two ounce jugs of fast-acting glucose called DEX 4 with fifteen grams of carbs per serving, very portable, and take about eight to ten minutes to work. At home I use Mango nectar usually mixed with soda water and try to eat balanced smaller meals throughout the day.

My eyes and skin have lightened up considerably, even though my latest blood tests show some pretty steep rises in all the wrong places.  I actually feel a bit better for longer periods of time.  Dr. Kubove at the Burzynski clinic called with what was to be my regime for the next few months.  It was a combo of weekly Herceptin infusions and Tarceva (Erlotinib) pills on a daily basis. We didn’t have the final prices on all this, not counting the $4,500 a month for case management, nor the cost of the three pills they already had me on, but it would be close to, if not more than $15,000 a month.  This is a figure that we couldn’t even begin to carry.

I had stopped taking the PB antineoplaston tablets a few day before this news to see the effect on my energy levels and it was dramatic.  I did not feel barely present most of the time and that had a really good effect on my overall attitude.

This week also had a switch in my Kaiser oncologist, to a Dr. Bruce Carson Clark and he really seems to be a caring, helpful, straight shooter.  Quite refreshing for Ha and I in our experience with Kaiser doctors generally speaking.  Dr. Clark thought Tarceva dangerous considering where my condition was at.  My gut instinct felt he was right.  With the side effects I had read about, if this stuff failed, this was not the way I wanted to live for even a month.  And after much discussion with my wife and mother we decided to drop the Burzynski methods entirely and go with what had been my basics from the beginning. We had also spoken with a Dr. Kunin in San Francisco who worked with vitamins and sounded interesting...we’ll see.  

I’m hoping the coming week will be smooth and low-key , with acupuncture, yoga (to which I’ve added some liver based Qi Gong), meditation, massage, mind-body work and rest.

My mistake

If I had a buck for every time I thought I was right, and I turned out to be wrong I could keep myself in Schlitz and Slim Jims for at least a month!

Tykerb and Tarceva are not Chemo drugs. The way I understood the explanation is that they are Gene Targeted Therapy drugs. OK, some research, and then a nap. Another blog coming Sunday unless something major happens.

#18 Ch, Ch, Ch, Changes. Turn and face the strange...Yikes!

The blood sugar drops have been getting harder to control, the itch factor has cranked up a notch or five, and the pain levels had me resorting to more and more Jungle Juice (sub-lingual Liquid Morphine) and the depression was devastating so I stopped the Tykerb because these are all its side effects.  Except the depression, but I’ll bet it’s a contributor to the overall depression reason.

Dr. Cole at the VA emergency clinic said I looked a little jaundice and so did Dr. Kelley a few days later, and yet another new Oncologist we saw at Kaiser,  one Dr. Bruce Clark, and our first impression of him was that he was attentive and knew my history thus far, and he too mentioned the yellowed skin. Then this morning coming out of the shower and looking in the mirror it had progressed to my eyes...YIKES! Yet one more symptom of Tykerb, which I had stopped four days earlier. Hopefully they’ll all wane slowly away. 

The Burzynski clinic did manage to get the rest of my tumor markers from Kaiser and now they’re talking about Tarceva, more chemo.  And I can stop looking for an infusion clinic for the Herceptin because Tarceva is a pill.  The price range being around $1,800 to $3,095 per 30 pills a month.  Unless they want me on more than one a day.  I thought I was going to Texas to get away from chemotherapy.

The depression seems to be lifting a little tonight; it’s 7pm and I’m not feeling like a basket case.  My wife and I have a lot of thinking and talking to do this week about our next steps and what the side effects of Tarceva are gonna be, and what kind of quality of life symptoms I can expect.  And what kind of questions we need Dr. Kubove to answer for us. Thank the heavens I have such an amazingly intelligent wife and partner.

OK, fading fast...next week.

#17 As Up To Date As It Can Be To This Point 1/23/11

And by that I mean it’s today, Sunday, another weekend day to spend with my wife.  We did have a lovely, quiet and meditative walk this morning, although I’m down from an energetic forty minutes a day, to between 20 and 30 minutes at a reduced pace.  But that’s OK, morning air is filled with pure Qi; the sunlight, each breath we take in and the nature that surrounds us is the best soul food.
It has been a rough week that started with a trip to Kaiser’s emergency “clinic” last Saturday.  I wasn’t feeling too bad Friday night and had made some fish and baby brussel-sprouts for dinner.  Ha loved it, so did I but I could only handle two bites of fish and six or seven mini brusslers.  About twenty minutes had passed when on the far right side of liver territory the semi-new pain I’d been having for about a month or so, not real bad pain but noticeable, shot up to a fat seven.  I hadn’t used any breakthrough pain meds, I call it Jungle Juice (because it tastes like the Primate house in the Zoo smells), in about three weeks to a month.  I sucked down two milliliters, one dose, invited my wife to the couch for a hand to hold and some hugs, and waited a half hour.  Felt like a nine now so I did two point five mLs., and we called the advice nurse at Kaiser.  Symptom talk ensued, the pain began subsiding, and I was given an appointment for the next day.
The next day moved painfully slow at first then way too fast for us towards the end.  I could easily write a fifteen-thousand word exposé about Kaiser’s incompetency, but I’ll save that for the book I’ll be writing when I have the more than a third of my brain to work with, sans cancer and drugs.  But what ended up happening is, without contacting my oncologist at Kaiser, Dr. Schwartz, they decided that it was gall stones and would be doing an ECRP, or removing my gall bladder.  By this time it was the next day, Ha and I had slept in the tiny hospital bed because they never brought her in anything to sleep on even after asking six times, my mom was there by now-of course, and we three huddled and decided to check out against doctors orders and drive home ( they had been giving me IV Dilaudid shots) call the advice nurse at the VA and start over.  Very good decision as it turned out.

Saw the twenty-four hour clinic doctor, a Dr. Cole-sharp guy, who said it didn’t seem like gall bladder anything and said that he’d contact my oncologist, Dr. Kelley and that she would call me.  Rather than admitting me he asked if I could control the pain, which by this time was controllable with the Jungle Juice, and sent me home. I saw Dr. Kelley on Wednesday, had an ultra-sound and blood-work on Thursday and got this email from her on Friday:
Hi there,
Good news that the ultrasound doesn’t show any evidence of gall bladder infection or blockage – there is no “biliary dilatation” or stones, and there is just mild wall thickening and some sludge in the gall bladder which is definitely NOT a reason to do surgery, probably isn’t causing any symptoms at all, and can be seen in “normal” cases.  Also, there is no ascites seen on this study, which is good to know.  Hope you’re feeling better!
I have had to add the Jungle Juice back in my regime but so far it’s only been two to three doses a day.  And I’m having some other new symptoms as well. I have a real hard time keeping my blood sugar up, and being diabetic which previously I handled with exercise and food, has me taking my blood sugar five to seven times a day, sometimes more.  I always have to keep some form of sugar handy because severe drops are way serious.  Then there’s the itch, I’ve been kinda itchy for a while but nothing like this, I’m scratching like a fiend all day and everywhere, with the exception of my head, neck, face, pubic area, and the soles of my feet.  It started with my lower legs and calves, along with my abdomen then crept all over. Some of it gets red and rashy, some doesn’t. But it itches friggin’ everywhere.  And the last one is depression which I’ve never really had seriously enough to seek help, and in wondering about the outcome of all this, would seeking help be helpful? So far my wife and family have been all I need. I think I’ll keep it that way.  Also the mind-body work that Dr. Rossman has taught me through the CD’s and our acupuncture sessions are working quite well too.
Gosh, it feels so good to be caught up.  Tomorrow is Craig and the Skype, then in the afternoon Mumsy is coming for another sleep-over and to drive me to acupuncture in Marin County on Tuesday. I’m going to try and rest as much as possible this week, it really helps.

#16 Getting Treatment

We were so happy walking in to our house after three weeks in Texas, it was a joyous relief. Mom had stayed there to take care of the cats, and the house looked clean and felt calm, just how we left it. The cats were happy and healthy. Our home truly is a sweet home. OK, on to the tasks at hand...and there have always been tasks at hand since this ordeal started.

Our doctor from the Burzynski clinic had given us a list of doctors in California that would be willing to work with them on my Herceptin infusions I needed once a week. I’m guessing now but I would imagine that seeing as how the FDA only approves this drug for breast cancer (just recently approved for gastric cancer in Europe) that many doctors won’t even consider administering Herceptin for liver cancer. The only one remotely close to us was in Fresno, three hours away by car or train, but the real kicker was the fee. Herceptin itself costs about over two-grand per infusion dose, but for what this guy wanted on top of that I could have flown back to the Burzynski clinic, got the infusion, and flown home with enough left for a burger and fries!

Everyone flew in to action and the upshot was a reasonable rate with a doctor in the Bay Area.  As I haven’t had my first infusion since getting back almost a month ago (not a good thing) I don’t have much more to add.  We’ll see how the first one goes.  I’m scared and wary, but as of late, those feelings have become a huge part of this thing.

Before we had left the clinic, Dr. Anderson had taken me off Tykerb because my liver enzymes had risen and the side effects were big time funkified, and she said that when I started back up it would be with half the dosage and gradually work my way back up. I emailed Dr. Anderson for the fourth time since getting back and had always had pretty quick replies.  This time after a few days I got an email (not a phone call) from the clinic that Dr. Anderson was no longer at the clinic, and Dr. Kubove would be my new doctor. Then I got a call from Meighan, a nurse that works with Dr. Kubove, saying that she would be my liaison, as it were, for Dr. Kubove and she’d be checking in weekly, but that if I had any problems to give her a call.  This is part of the $4,500 a month the Burzynski clinic charges for case management; there are other tasks involved like checking my weekly blood-work, which we have to pay for at Lab Corp, and I’m sure there are other things as well...

I had also been on a drug, Zolinza, which sounded like a Flamenco dancer to me, that also had some rather unique side effects.  Except Dr. Anderson also stopped that the next day so I’m not quite sure which drugs they had attributed the side effects.  Although Zolinza hasn’t been mentioned again I have been on one (250mg) Tykerb a day for 5 days and am supposed to go up to two a day in three days. Scared and wary.

Buiding A Possitive Attitude

Hunt had asked me to write a post for our blog about our preparation for the trip to the Burzynski Clinic and I kept postponing the task. Not because I didn’t have the time nor the events to write about; I had way too many things in my mind and didn’t know where to start. Although we’ve been on this cancer journey for almost a year now sometimes I feel like it’s just a dream or nightmare and if I try to wake up then the nightmare would go away. It didn’t go away and here I am writing for the blog.

The only good thing about this cancer is it has given me an opportunity to observe the people around me, and to learn how they behave differently under certain circumstances, and that these behaviors of humanity have always existed. The person that surprised me a lot even though I always knew how amazing she is, was my mother-in-law, Barbra. She emerged into this cancer journey as a caring mother with her strong personality and an ability to handle any situation which I couldn’t believe if someone had told me before. She never wants to admit her age, but living more than three quarters of a century – I’ll let you to do the math, would have given her all that strength and the attitude of I-will-never-give-up that her son will be getting better. In just a short period of time she could find out the information that I needed by researching the Internet or by simply making phone calls. The most challenging task that she’s been handling pretty well was to survive being around with Hunt while he was not in a good mood due to pain, or suffering from the side effects of the medications. Not being a mother myself, I couldn’t imagine what else a mother could have done for her children.

Hunt’s cousin Sharon was another character that has appeared into our journey as an incredible person. She was the one who fired up the questions about Hunt’s health issues when we came to her house for the Seder last year, two days after Hunt had the liver biopsy. Since then, Sharon has been involved heavily with us by providing us deep information about liver cancer and pros and cons of the treatments that Hunt has been given. The thing I really appreciated about Sharon was she never told us what to do but left the decision for us to make as any treatment would have the side effects as well as the benefits. With the Burzynski treatment protocol which focuses on Hunt’s genetic tumor markers HER2+, she would give us the benefit of the doubt by moving forward on making comments about the treatment regimen without questioning if Dr. Burzynski may be a quack. Hunt and I have brought Sharon’s notes with detailed questions with us to the appointment with Dr. Kelley at the VA San Francisco, then to the appointment with Dr. Anderson at the Burzynski Clinic and it turned out her notes were very helpful. These notes may have been boring for those who are luckily not dealing with cancer but for those who are fighting cancer for their lives, I will be happy to share them with you, of course with Sharon’s permission. On top of everything that Sharon has done to help us out, Craig, her husband, has always been there for us too. He’s even coming over to set us up with Skype, so we’ll be able to see our families on the East Coast and in Vietnam! 

 

Another character I would like to mention is my sister-in-law Al who I usually call “Bro.” As very smart and brilliant as she is, Al’s role in her brother’s cancer journey has been very unique. Through her social network, she found Dr. Katie Kelley at the VA Medical Center in San Francisco and was able to get an appointment for Hunt to be seen within the next few days while we had been struggling with Kaiser to find a decent oncologist. Dr. Kelley has turned out to be a quite incredible oncologist and we feel lucky to have her. Recently with the Burzynski clinic treatment protocol when our funds for Hunt’s treatment became scarce, Al has volunteered to help us by working with our cousin Craig and friend (Hunt’s ex-wife) Katie Macks to organize fundraisers for Hunter. I know running a law firm and taking care of her son Amir would take up much up her time so I really appreciated the time and effort that Al has put in to help us.

It wouldn’t be a complete picture if I didn’t mention Aunt Rhoda and Uncle Stan, cousin Nicole and her family, my mother-in-law’s friends Judy, Carol, Ray, and Hunt’s friends Diane and Lauren and best friend Marvin. Together they give us hope and help us build a positive attitude that Hunt will be in remission.

#15 Trip to The Burzynski Clinic in Houston, Texas (from December 12-31, 2010) to start treatment

It was a clouded and drizzly day when we walked in to the four story dark-mirrored glass building. “9432 Burzynski Clinic” in half a story high raised white lettering written across the top. Landscaped and finely manicured surrounding gardens with the occasional bench here and there; impressive was my first impression. That continued with just about everything, from the level of care that we received, to the exit plan packets with all our records and a set of standing orders for the doctor we were to find to continue our Burzynski protocol. I always hear the Dr. Burzynski’s critics say how expensive it is, and believe me it had my head in a hive on the very first day, which has also continued, and probably will for some time. But in comparison, let’s say if chemotherapy and radiation were not covered by insurance...I couldn’t even imagine what the Pharma corps are hosing the insurance companies for those drugs, and guess who those guys hose? So when you look at it that way, or this, it’s still a ton of dough and it has to be paid. Judging from Dr. Burzynski’s track record and what I’ve seen at the clinic, I’m just glad I found him.

We were there for three weeks over the holidays and had a quiet but good time. I’m a Jew and my wife is a Buddhist, so Christmas hasn’t ever been high on the radar. Ha knew this guy that used to work with her in Vietnam and now lives in Houston with his wife. Tim and Lana, super great couple, were very caring and couldn’t do enough for us. They were really fun and funny; they absolutely loved this one buffet style Vietnamese restaurant they took us to, Kim Son. Lana explained how you have to have a plan of attack to successfully eat a mountain of food. Lana is a small slender woman, and Tim is no giant nor is he fat. Over the course of two hours, after Ha and I were done and done in the first forty-five or so minutes, Lana and Tim were just starting their first of three dessert courses. When I complimented them on their plan, they said, “Yes, yes, thank you, but no to go, understand? Have to eat here, everything, eat here!” Then we all started laughing. Good times.

Times like that help me out tremendously because symptomatically there’s just so much to deal with all the time. Usually Ha and I walk for a half an hour to forty-five minutes daily. My mind feels fairly clear and I’m able to converse coherently. I’m able to feel grateful for having another day filled with moments. If I sit down and try to read, write, anything really, I have a tendency to drift but can usually get a few things done. Then as the day passes noon I slowly start to become cancer’s marionette, and the disease is the manipulator of a vast legion of wires. But the one wire I can never let it have control over is the one wrapped around my soul. All the other wires are meant to weaken the one. The soul wire. When I realized that cancer is a fight for my soul I started to understand how people give in and it is not the easier or harder way it is just the other way. Both wires may be garrotes.

#14 What will you do, what WILL you do?

It was about this time my mom gave me Suzanne Somers’ book, “Knockout” and I started reading.  Reading doesn’t mix well with my fatigue symptom nor the opiates.  I can read a page to a page and a half, then doze off, and then wake up and have to go back and skim over what I just read before starting again. So it took me a couple of weeks to get to the part in the book about Dr. Burzynski, who did not use chemo but something he was calling Antineoplastons.  I was intrigued so I went to the web, that wonderful land where you can find everything right and everything wrong with everything.  And I did; I also found out that they just came out with a movie about him! Now the serendipity gong struck a big Zen toll. There was a premiere in Berkeley of the new film “Burzynski-The Movie” next Friday in Berkeley.  So I bought four tickets and myself, Ha, Mumsy, and Marvin decided it was a couldn’t miss opportunity. My Cousin Craig (Sharon’s husband) met us there.  Just as an aside, Craig had met us at many doctor visits, with and without Sharon, and takes pertinent notes like a champ.  He is also one of the sweetest, most caring people I know.

I was still on the tail end of the Capox horror but I wasn’t about to let that stop me.  Sadly it did.  Fortunately and unfortunately it was at the tail end of the movie but right before the Q & A section of the evening, and boy did I have some Q’s, and desperately needed some A’s! But Between the nausea and diarrhea I had already been to the bathroom five or six times throughout the movie and now felt like it was getting worse, so we made our goodbye’s and Ha and I dictated some quick questions to the group and hightailed it outa-there.

My mom was the champ that night! She’s got this gift where she can get somebody talking about themselves and exchanging information with her, becoming fast friends, and the next thing you know she’s having them over for dinner.  I have never understood this, but I’ll tell you, I am so grateful for it these last few months.  She met a woman there, Teresa, who lives in the Bay Area that has been in remission for 9 years from the Burzynski treatment.  Teresa is a huge help and continues to be.  Also mom got the telephone number of a guy named Schad in Texas, who had (yes had) the same cancer as me and has been in remission for three years because of the Burzynski Clinic.  Mom’s are such a good thing.  And mine is up there with the best of them.

Ok, now it was time for some serious research, telephoning, planning, and getting as much information from Dr. B’s Clinic as we could and try to reach a decision.  Giddy-up y’all.

#13 San Francisco VA Medical Center Dr. Katie R. Kelley (May 05, 2010)

It was nicer here, more of the staff smiled at the patients and each other, the level of respect was pretty cool.  We found oncology, checked in, and had a seat.  It was my mom Barbra, sib Alex, Ha and myself.  Dr. Kelley has turned out to be one extraordinary oncologist.  At the risk of fawning effusiveness she has been one hundred percent behind every standard and alternative treatment that was put on the table from yoga and acupuncture, to clinical trials she heard about, as well as Reishi mushrooms and the Burzynski Clinic.  She could only recommend the FDA approved clinical trials, but she would let me know if it was safe for the other things.  With the exception of the Burzynski Clinic, on which ethically, she couldn’t really talk about. But she did want to see all the reports from the clinic.

At Kaiser they had put me on the Nexavar, but I was supposed to start full dosage the next week.  Dr. Kelley kept the dose lower for a month and then raised it to full.  She said the efficacy would be there and it would give my body a chance to get used to it. I felt a lot better on the Nexavar.  Aside from a few side effects like little sores at the corner of my mouth-Blistex, dry feet and hands-Eucerin, and even after preparing great meals for my wife and I, I’d sit down and the smell of the food would sicken me-Peanut Butter filled Pretzels and Popsicles on those nights.  Other than that Nexavar seemed pretty miraculous.  I felt good and the quality of my life, all things considered, was good.  I continued my thirty to forty minute walk in the morning almost every day, practiced the restorative yoga, and woke up fairly happy most days.  But most days there was a beast looming...it was always there.

Then a couple of months later Dr. Kelley told my wife and I about a clinical trial she thought had real potential.  First thing though is I had to stop the Nexies for a month! But I trust her so I stopped.   After she tried and tried, for that month, and I did many tests to get me into this one clinical trial, I was eventually turned down through no fault of hers.  The ’08 heart-attack was the culprit.  It was a fairly crippling blow especially because I couldn’t go back on the Nexavar.  Dr. Kelley said that at this point it would be too risky.

Her next recommendation was a combo chemotherapy deal called CAPOX which her boss recommended.  It had a ten percent chance of working and had been used previously for a different type of cancer that had metastasized to the liver, but never directly for liver cancer.  It involved a regimen of Capecitabine plus Oxaliplatin one was an infused drip for which I needed to surgically have a "port" inserted and the other was pills.  A port is an implanted direct line to a major vein. My intuition told me no but ten percent are the best odds I’d heard yet and was swayed.

We read the side effects and Dr. Kelley explained them as best she could.  It was very strange. After the first infusion anything cold made my face, fingers, and hands tingle.  If I drank anything, even above room temperature, it felt like drinking gravel.  There go my popsicles.  And that lasted for three weeks, at the end of the fourth week it was time for another infusion.  My fingertips began to crack and split (which they still occasionally do) and bleed.  At around four to five o’clock the fevers and cold sweats would start...every night.  Sleep was like intermittent at best, and every night it would be the same scenario, sleep a couple of hours up a couple of hours.  The first half of the day I’d feel ok, so I kept up the walking but it was down to a slow half hour.  Then in the second week depression was strangling me and every night when the fever went up to 101 or so I began to think that this is my last night.  I would not be waking up tomorrow.   When I’d wake up throughout the night I would be scared to go back to sleep so I took a Xanax. Which helped with the stress and relaxed me enough to sleep a couple of more hours.  I set my iPhone for six in the morning with a harp alarm and a message that read “Another day you lucky bastard!”

#12 First visit with Dr. Corey Schwartz (April 29, 2010)

We showed up en masse, there were six of us.  Myself and Ha, Mumsy, my sib Al and her wife Jessie, and our secret weapon, my cousin Sharon.  Sharon works for a pharmaceutical company and a good part of her job is to study cancer and cancer drugs.  She was an incredible asset that day.  And she’s a Samurai warrior when it comes to dealing with oncologists. But when it comes to her kin, do not mess with Sharon’s family!  I had a whole new respect for her that day.  I’m pretty sure Dr. Schwartz, after his 15 minute private conversation with her, had not only respect, but when he came back in the room, the playing field seemed to be completely level.

We then talked about therapies but because of my AFP levels and portal vein blockage, previous history, on and on, wasn't going to be an option.  I was left with one of those choices that's not really a choice.  The only thing left for me was this drug called Nexavar (Sorafenib) which is, and Dr. Schwartz made this abundantly clear that it was a life extending drug, NOT a cure in any way shape or form.  Then he said I had about five or six months to live, and with the Nexavar possibly eight.  Eyes met eyes and looked away, the room seemed close, the air went out. 


Dr. Schwartz excused himself.  “Do not forget about the pain clinic appointment.” I said, and he replied “I’ll make that right now.”  Which if it was done then the pain clinic lost it because it took over a month to get in there and then a month to find the right mix that worked.  It was beginning to feel like every time I left Kaiser in Vallejo that I felt worse than when I went in.  Especially in the months to come and the emergency visits.  I began to think that they're gonna kill me in this effing place!

My amazing sibling’s best friend’s father happens to be Dr. Lawrence H. Einhorn.  He’s the doctor who led the team that cured Lance Armstrong.  If you gotta drop a name in the cancer world very few carry such gravity.  Because of this connection and some serious phone-work Al had gotten some names of doctors in Kaiser and the V.A. (I’m a Veteran and have veterans insurance too.)  Long story short, I was fortunate enough to see Dr. Katie Kelley at the V.A., she worked full time at U.C.S.F. Cancer Center and one day at the V.A. U.C.S.F. is also where Kaiser sends all their liver transplant, among other therapies like clinical trials when the trial is not available at Kaiser, that type of thing.

Dr. Kelley has a great reputation and is a wonderfully caring person.  And now she was my oncologist.  I will never cease to be amazed at my siblings ability to make such a huge change at the exact moment I need it.  Dr. Kelley talked with Dr. Schwartz and he set up a telephone appointment with me so he could be kept in the loop.  On the day Schwartz was supposed to call he asked for someone else? “Who”, I said.  He repeated.  I said “this is your liver cancer patient, Hunter Austin.”  “Oh, do you have an appointment today? The computer must have made a mistake.”  (I can't tell you how much I love that excuse) I was flabbergasted.  Enough of that nonsense, suffice it to say I haven’t, to this day, heard from him.  Thrive...oh yeah!  I did see him in the hallway when I was picking up a prescription and he looked right at me and walked on by.  I stopped and said “Dr. Schwartz!”  He turned and still nothing.  “Hunter Austin? Liver cancer?” “Oh, how are you?”   I chuckled, said “great” and kept walking.  I believe I heard him saying “I’m sorry, I have so many patients... .”

#11 First Oncologist Appointment (April 19, 2010)

Dr. Fehrenbacher was the first oncologist we saw.  My wife was with me for this one and I voice-recorded most of the conversation.  I was beginning to feel like Lenny Bruce and was sure that Dr. Cohen had let this guy know what a volatile patient I’d been so far.  Replaying the tape before I sat down to write this I realize my paranoia was fairly well founded.  I’m not going to go into detail about why, suffice it to say the tape says it all.

Once Dr. Fehrenbacher started asking the questions that I’d answered for doctors at Kaiser at least thirty times already I began to lose my patience.  But I did manage not to go adversarial on him.  He was in the middle of asking me about the heart-attack I’d had in ’08 and I just stopped and made a left.  I went in to a lengthy discourse starting with how I thought we were there to find out what exactly was wrong with me, what I could expect, and some sort of plan to deal with my current problem.  I had also asked for Dr. Corey Schwartz to be my oncologist, I told Fehrenbacher it was because of a feeling I got when I looked at his picture in the outer-office. The truth is, I’m a Jew (Rubin and Cohen so far, it couldn’t hurt to have a Schwartz.) so I tend to pick my people...it’s usually not a mistake.

With this doctor we did find out one quite valuable bits of info, i.e. a normal amount of alpha-fetoprotein (AFP) in people ( I don’t know the unit of measurement) is about 15, with liver cancer it goes up significantly, with mine it has never dipped below immeasurable.  In other words all the blood test says is >35,350.  That’s the highest they measure.  That and a one other piece of the puzzle, we were soon to learn; like my portal vein was almost entirely thrombosed (blocked by the tumors) would prove to exclude me from most things they had or were coming down the road.

#10 We are in charge of us (April 10, 2010)

So far we haven’t seen an Oncologist and we’re feeling way confused.  We started digging on the web for some answers and turned up a relatively small number of items when it comes to Hepatocellular Carcinoma.  Transplant, T.A.C.E., Chemo-embolization, etc...I also started thinking about angles of approach and knew that it was important for me to put together an alternative team who would help me work on releasing this cancer from my body.  

I decided that open mindedness, would be crucial and to try my hardest not to judge—prior to research.  I knew acupuncture, yoga, diet, massage and meditation would be my foundation and luckily had a number of years experience with yoga, meditation and acupuncture.  The kind of yoga I had been doing, a fairly strenuous Iyengar routine, wasn’t going to mix well with my pain levels.  A Restorative yoga teacher was what I needed.  I found Cynthia Friedman, who happened to be a licensed family therapist too!  She provided a great foundation for this prop-oriented, more gentle style of yoga, and some very good therapy sessions.  Very respectful of my new limitations and super attuned to my Qi.

The last great acupuncturist I’d had still practiced, but all the way over in Santa Rosa, so I started with one in Berkeley.  Soon heard about Dr. Rossman in Marin and switched.  Dr. Rossman is also an M.D. who started acupuncturing people over thirty years ago in Marin, and his breadth and wealth of knowledge, sensitivity and caring are abundant in every aspect of his practice.  And, lucky me again, he also specializes in the mind-body connection, which back in my pre-yoga/meditation years made me a little squinty, but now had my full attention.

And introducing Michelle “Manos Del Oro Solido” Gonzalez.  LET’S GET READY TO RRREEEEEEEEELAX! This has been an hour a week where I can be content with just focusing on the beauty of the ability to inhale and exhale...Michelle has an innate ability to not only feel where the stress is stored in your body, but to also apply the proper pressure and movement to help that stress disappear.  Sometimes we also do whacky Manga-style tumor annihilation visualizations.

Diet?  I went as organic as possible, with the emphasis on veggies, legumes and grains, and meats. I bought a good water filter and doubled the amount of water I was drinking.  I checked out food/cancer books from the library and started making lists. I also got a juicer.  Red or purple grapes, beets, and a few dandelion leaves I called the cancer crusher.

 Meditation always followed yoga for me and I stuck to that routine.  It took Ha and I a while to get all this together and then work with it when my schedule started filling in with western medicine oncology madness.

Oh yeah, I forgot, I wrote to the Medicine Man who married us and asked him for help.  Two weeks later I got a medicine bag with stuff in it and he said that we could add more, and to wear it around my neck, and a letter telling us that we would be in the sweat lodge prayers.  Ha and I did a sweat lodge with Ricky and Andrew and part of their tribe before our wedding.  I was deeply moved by the fact that all they ask for is mercy.  The night we did the sweat I dreamt of my father, a man with whom I had a very tumultuous and complex relationship, we were driving around with me at the wheel and I was making him laugh.  When I saw Ricky at the wedding and told him, he said “It’s not uncommon to dream after; I hope you guys worked it out.”